Hi, all.Does anyone still not feel like their old, pre icu self. I came out of icu 5 years ago after having respiratory failure pneumonia and being on ECMO and tracheostomy for 28 days, intubated 6 weeks.
5 years on, I still feel weak and tire really quickly. I have less concentration than I used to have too.
I'm getting used to this and wonder if this is how I'm always going to be now.
Don't get me wrong, I'm grateful to be alive but frustrated that I'm not me anymore.
There has been a lot of talk of Long Covid and before that everyone spoke about Post Sepsis Syndrome - each have many similarities in common as does PICS - post intensive care syndrome.
”Post-intensive care syndrome (PICS) can cause a variety of physical, mental, and cognitive symptoms. These symptoms can be new or worsen existing problems.
Physical symptoms
Muscle weakness
Pain
Shortness of breath
Difficulty moving or exercising
Poor mobility
Contractures
Reduced exercise tolerance
Mental health symptoms
Anxiety
Irritability
Depression
Sleep disturbances
Post-traumatic stress disorder (nightmares, unwanted memories)
Decreased motivation
Cognitive changes
Difficulty thinking
Difficulty remembering
Difficulty concentrating
Executive functioning deficits
Attention deficits
Memory problems
Delayed processing speed
Visual/spatial problems
Social impairment avoiding socialization, loss of previous social roles, reduced social confidence, and perceiving themselves as a social burden.
PICS can last long after hospital admission and can cause significant stress for patients and their families.
Risk factors duration of sepsis, delirium, mechanical ventilation, malnutrition, and inactivity. ”
Wow, a long list of after effects, many of which I can recognise in myself. I never had COVID , fortunately. I came out of hospital early due to infection risks though in March 2020.
I can attest to experiencing at least half if not most of the list sepsur posted (some temporary, others longer lasting).
PICS really is a broad category of symptoms and side effects of intensive care, and not a specific illness itself. Some of the listed lasting effects may vary depending on an underlying illness, but most seem to be directly related to sedation and the nature of extended periods of intensive care.
I was in the ICU in early 2021, and tested positive for covid while there, but my symptoms never fit that every growing and changing narrative (which at one point was so broad a sprained ankle could qualify). I had three types of pneumonia and ARDS - probably resulting from an adenovirus, as that perfectly fit my symptoms leading up to admission.
I've never subscribed to the covid and long-covid hype that has distracted from treating many other valid side effects and illnesses. Unproven diagnoses of "long covid" based on presumption have distracted from real PICS diagnoses here in the US as well. One of my physicians listed my PICS symptoms as "long covid." I didn't bother to try and convince him otherwise since PICS wasn't his expertise.
This is all the more reason for us to communicate and support one another here as proof that the ICU is a life altering event for many of us, and it has an accepted, and widely studied, accurate acronym and description. Advocating through PICS groups is also a great solution.
I am three years out now, and to some degree I think I am only just figuring out what is probably going to be the new normal. I get the feeling the longer we live with changes, the more frustration seeps in as we come to realize there may be no going back. It never hurts to try to improve, and we should, but learning to live with and make the most of the deviations from normal is also wise.
I was in hospital 2016 - PICS describes very well all that I have experienced since.
What I also acknowledge is I incrementally improve too 💙
i was intubated & in a medically induced coma in Jan of 2021 for 6 days because of DKA. Most of the PICS symptoms accurately describes my past 4 years. I am definitely getting better but i am definitely nowhere near capable of what i used to be, physically or cognitively.
as an example, last week i finally got a small piece of software that i wrote to work. when i was trying this same thing last year, i would struggle and end up frustrated to the point i was befuddled and gave up. i can remember back and recognize that i had brain fog, a terrible memory and general lack of cognitive ability. looking further back, i can remember that shortly after getting out of the icu i was content to just look at the popcorn ceiling and look for faces, with a lack of curiosity that contributed to having no motivation; i was super basic.
when discharged, i had two hospital-acquired pressure wounds and ulnar nerve damage (there was a staff shortage on the critical care intensive care unit because of a covid outbreak i was not rolled or turned enough/properly. i have somehow, also never, ever, popped a positive test (yet) despite being heavily tested in the hospital. i sort of understand why they think it might be long COVID but i guess i'm just that unicorn. if i was paranoid, i could see myself thinking maybe the nurses misreported my test results but like i keep saying, i'm getting a little bit healthier everyday. in reference Lux95 while i think covid and long covid are real, i also believe you when you say your symptoms more resemble PICS. Upon discharge, none of the doctors or nurses warned us or said anything about PICS or the ptsd i experienced.
the wounds took about 14 months to heal with weekly visits to the wound care clinic and although my fore arm and hand don't feel like i was kicked in the funny bone with a steel toed boot anymore, i still can barely use it. i have zero grip strength and numbness from my fingers to halfway up my forearm. typing (ie: hunting & pecking) novels like this takes 5x the effort it would have prior to going to the Emergency Department. i was always terrible typist, 30 wpm with tiny bursts to 50 but i could do that for hours. now it's 20ish wpm, including the small bursts where the words are easy to type in spurts less than a couple minutes long.
before my visit, i was a political activist/organizer and a retired network engineer, 4 years later, i am only sort of able to get politically active and just recently got a simple web scraper to work.
in the past 9ish months, i've actually started coming to terms with the nightmares i had under medication; multiple narratives weaving into and out of existential terror, (including 'the bad guys' beaming radio waves into my head), all of it slathered in paranoia. I've recently been able to start therapy and my therapist says i definitely have PTSD. And while it's still an obstacle, it's not as bad as it was; i am finally well enough to recognize that progress is possible.
i feel like a shadow of what i was before the coma, but i have also been improving a small amount every day since then. i may or may not ever get back to where i was before my hospitalization but i see that i can improve and despite the frustration of struggling and pushing myself being prerequisites for getting stronger-better-faster, it's simply the cost of recovery.
* stay nourished - remember to eat. set alarms if you have to. plan ahead and make/buy/find quick and or simple snacks that you like ahead of time, so that getting calories onboard is easy enough to follow through with.
* get good rest - sleep is when our brains fix themselves and do maintenance. it's a superpower that you owe yourself.
* stay hydrated (this one is tough for me somehow lol) without enough fluid, your body starts redirecting water in your body away from areas that you'd really rather have hydrated.
* give yourself the grace you deserve; our inner narrator is our worst enemy and also our best ally - don't beat yourself up for having limits. would you treat your friends or loved ones that way if they were up against what you went through?
* do your therapy - if it's difficult, that means it's working; that's how we get stronger, by pushing whatever limits we have at the time. it sucks but it's exactly the way the worlds best athletes feel when they are pushing themselves to their limits, so that's something we all have in common
* move (within your own limits/parameters for safety) - movement is medicine. There is chair yoga, strength training with exercise bands, small weights (curl a water bottle (or water jug, etc) while you watch youtube?), swimming, even just walking (within your limits!) somewhere (with a friend?) will improve your balance and core strength. Knitting, water colors, and even coloring books help to build dexterity and building the ability to pay attention to something and can be done while sitting/watching tv, etc
thanks, Sepsur for the info about PICS; it so accurately describes my experience and helps me understand why i (we) are struggling in the ways we do.
Best regards, 😁
The thing with PICS, PSS or long Covid is not whether they exist or not - they all certainly do - ( although they maybe describing the same thing) it’s more the establishment’s willingness to carve up the big problem and focus on smaller portions like long Covid clinics - there have never been any PICS clinics trying to address what we have all experienced - I think it’s a funding problem - “ if ( we) acknowledge there is a problem then we are obliged to do something about it” - therefore let us not acknowledge PICS on a corporate e level.
Two years on after 8 weeks in a induced coma and four months of icu.I am still tired all the time, have severe memory issues and can't feel my legs bellow the knees due to perineal nerve damage.
It's the new me!
I'm not letting any of this hold me back.
I work with two hospitals and three doctors sergeries and do talks to icu professionals in the NHS. I have also set up my own art workshop and am more active than I've ever been, the new me is a better person.
I can no longer work and walking is a true challenge, but my days are full and active, physically I'm a bit of a mess but I never let it hold me back.
Embrace the new you and come to terms with your limitations.
I live every day to the fullest and thank the lord for every one of them.
To me they are all special and a blessing.
Don't let your issues ever stop you living.
Life is a wonderfully thing, enbrace the suck!
Hope you can get to a level of peace with your issues as I have.
At least you wake up in the morning, it could have been much worse I assure you.
God's grace.
Paul at the Steampacket Inn Knottingley.
It’s not about becoming a victim and resigning to limitations, PICS describes for me why I have experienced what I have experienced - everyone who knows me thinks I never stop - no limitations here 😜
HiYes im the same. But I now have cancer, in remission, and my energy level due to both the icu and chemo drugs has robbed me of at least half of my energy.
Hi. I agree with Sepsur the list of symptoms he describes are the unfortunate reality we live with, I’m just two years post ICU January, like Sepsur mentions I also see some improvements as well but they are incrementally small but wins all the same. I find it hard to come to terms with from my old self who was countryside walking all year cycling 25 miles once a week at least
Concentrating, reading, do home diy, reliving the delirium, anxiety every night, etc etc.
so will it ever get back to before I personally doubt it for me but I try to do more each week and see what happens at least we have all got the chance to try thank god. I’m great full to keep putting one foot in front of the other every day. We are all different and it takes what ever time it takes.
Good luck
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